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Crystal--you are having a rough go of it. I can completely empathize

with you. My son stopped eating altogether when he got his g-tube.

He had just gotten so tired of us nearly forcing food into him that

he was just so darned relieved that he didn't have to eat. He

stopped gradually after the g-tube and he also has hypersensitivity

due to his prematurity (he was 11 weeks early). He doesn't even

touch food.

the antiobiotic thing is so hard on their intestines. My son (who is

almost 3) responds well to liquid acidophilus. I found it online and

it helps with the diahrrea. My son is 30 lbs and we give him 10 cc

twice a day of a milk free liquid acidophilus (I know I bought it

through a yahoo store). It takes about 3 days to work.

Ashton's GI doc also put him on Immodium (2.5 cc 2 times a day) to

help with diahrrea when on antibiotics. It helped a little.

As for the not eating thing... My best advice is to let him enjoy

food as much as you can let him. Even if he eats just one meal a

day, you are doing a good job. We feed my son all night (rate of

68), during his afternoon nap (rate of 175 and get about 280cc) and

then during dinner (rate of 355, get about 155 cc). He is on

Peptamen Jr and we add about 2 Tbsp of rice cereal for every 8 oz of

formula. You may want to try to feed him a hearty lunch before his

nap. The one fabulous thing about the g-tube is that it is easy to

get medicine in them. We use the powder enzymes so it all goes in

the tube.

I have tons of experience with this g-tube thing with a toddler.

Email me if you have any questions. I know how hard this can be so

don't hesitate to ask questions.

mom to Ashton www.babyfergie.com

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Chrystal,

CF is a disheartening illness and it effects the whole family. I

hope that tomorrow is a much better day for you. Will eat

with other kids? Abby always wants to mimic bigger kids. Just a

wishful thought.

Gale

> Hi all..

>

> I am having a very hard time since my sons feeding tube surgery

over three

> weeks ago. He has not eaten hardly anything. On top of that he

was on

> antibiotics until surgery then after surgery which he grew out

morexlla (small

> amount) docs put him on a stronger antibiotic then he got colitis

from the

> antibiotic so now he can not be on ANYTHING to kill bacteria in

lungs....He

> has med every six hours for the infection in his colon...side

affects of his new

> med (no eating,diah you guys know the drill) they have stopped his

feeding

> tube since he cam down with the colitis and hes barely drinking two

resource

> boxes a day. The feeding tube has only caused me more strain

because he

> eats NOTHING..has this ever concerned you parents. I have heard so

many

> people say the tube is a blessing and I am sure it is for some..I

spend all day

> long making food for my son, ordering his fav chinese food but he

wants

> nothing. I am disheartened ..I am sure we all feel this way at

some point

> ...increased treatments etc. is 2 and half and participates

most of the

> time but when he doesnt it is really difficult. Thank you for all

of your support

> in the past. I am having a very difficult evening. thanks fo

rlistening.

>

> Crystal (mother of )

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Crystal,

I am so sorry things have been so hard. I sure would be very upset if all that

had happened to us. I know when had the surgery for g-tube and nissan

fundoplication, at first we had some problems. She gagged a lot and refused to

swallow solids for a while. She also had to be vented a lot during feeds. At

first she did loose a bit but then was able to gain when the tube was working

and she was eating. Are they hopeful that you will be able to use the tube

soon after the infection is cleared? I sure am sorry that you and are

going through all of this. I wish that we could take the problem away somehow.

Mom of 5 with CF

disheartened

Hi all..

I am having a very hard time since my sons feeding tube surgery over three

weeks ago. He has not eaten hardly anything. On top of that he was on

antibiotics until surgery then after surgery which he grew out morexlla (small

amount) docs put him on a stronger antibiotic then he got colitis from the

antibiotic so now he can not be on ANYTHING to kill bacteria in lungs....He

has med every six hours for the infection in his colon...side affects of his

new

med (no eating,diah you guys know the drill) they have stopped his feeding

tube since he cam down with the colitis and hes barely drinking two resource

boxes a day. The feeding tube has only caused me more strain because he

eats NOTHING..has this ever concerned you parents. I have heard so many

people say the tube is a blessing and I am sure it is for some..I spend all

day

long making food for my son, ordering his fav chinese food but he wants

nothing. I am disheartened ..I am sure we all feel this way at some point

...increased treatments etc. is 2 and half and participates most of

the

time but when he doesnt it is really difficult. Thank you for all of your

support

in the past. I am having a very difficult evening. thanks fo rlistening.

Crystal (mother of )

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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